Hartley Steiner www.hartleysboys.com I hate eating with my kids. Really, I do. Our meal times usually push me to the edge of sanity. And with Thanksgiving just weeks away, I am reminded that I will be eating with my kids in a formal setting with other people. Perhaps the turkey is less nervous than I am. Why? It isn’t for the reasons you may think. I have long ago gotten past the worries about what food my kids will eat, or whether they can stay seated at the table, or their inability to be hungry at meal time, preferring to graze all day. What I haven’t gotten over is their utter lack of table manners. Yes, table manners. I hear you — you think I shouldn’t worry about table manners, that perhaps I have bigger fish to fry. But bad table manners is a pet peeve I just can’t let…
Year: 2010
Molly Keene keenesandco.blogspot.com Today, we were working with letters. I pointed, hastily, at a “z” on its side that looked like an “n.” “Ennnn,” I said. “Ennnnnnnn.” “Eeee!” crowed Ollie. He walked over, turned the letter correctly, and said, again, “Eeee.” Well, I stood corrected. Today, he spelled walrus. Giraffe. Happy Halloween (that one freaked out my friends last week). He can’t say any of those words, but he can spell them. He knows the variations of his name, both full length and nickname, and will pull out books with each to compare the two. Today, he happily shouted letters as I gave phonetic clues. “Ah!” said I. “Ayyy!!” he replied. Today, we danced to Lady Gaga and the Glee soundtrack in the kitchen, in between therapy (with letters, today, because that’s what he wanted, and we are working on “being with”). Little Bit, in her jumperoo, laughed and bounced.…
Jennifer Byde Myers and Shannon Des Roches Rosa www.SEPTAR.org Community is critical for parents of children with special needs. Community gives us emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments. It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special…
Though it seemed like business as usual here at The Thinking Person’s Guide to Autism on Monday, November 1, our editors were participating in The Coffee Klatch’s Communicate to Educate 24 hour tweetchat instead of the same-day “Shut Down” autism fundraising campaign. We’ll let some of our favorite activists and advocates explain why we spoke out instead of shutting down: Steve Silberman at NeuroTribes: The idea that going virtually mute is an appropriate way to honor autistic people — for whom the Net has opened new avenues of communication and community building — does not sit well with some autistic self-advocates. TPGA Contributor Corina Becker: I was recently asked by a person on Twitter to participate, and I responded that there wasn’t much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person…
Karen B. Golightly Last summer I took my three kids to Costa Rica to meet with two other families. For most parents, this would be a pretty big feat. For me, it was a bit more than that. I’m a single mother of three children, aged 14, 11, and 5. Pip, the five year old, has autism, mostly manifested in transitions and lack of much verbal communication. So, let’s drag the crew to a tropical country, where I’ve never been before and don’t speak the language, during the rainy season. I figured, we’d done Disney the year before, Costa Rica would be a breeze. There were a few problems. I didn’t figure in the fact that the rental agency wouldn’t have an automatic car, or that I’d have to drive four hours, over a treacherous mountain range, in a huge pick-up truck with a camper on the back, with my…
Jennifer Minnelli, M.S., CCC-SLP www.autismsphere.com The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community. Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk: Denial: “This is not my child. She can do what you’re asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the…
Brian R. King, LCSW spectrummentor.com Recent headlines about the epidemic of bullying, unfortunately, point to school systems overall that appear either indifferent to bullying, referring to it in some cases as “a right of passage that children must endure as a means of building character” (one school administrator actually said this in an IEP meeting I attended), or they minimize it as a misunderstanding. Others exercise willful ignorance under the guise that “We didn’t see it”– as though the bully is supposed to say, “Teacher, looky here! I’m going to treat Johnny like crap now.” Give me a break! If a child bullies another student out of the view of a teacher, it’s still bullying and not an opportunity to evade responsibility because the bully is savvy enough to know when you aren’t looking. Let me be clear, bullying is not a simple problem of the playground tough guy establishing…
Elise, A.K.A. aspergers2mom asd2mom.blogspot.com We have all heard the stories. That mother who just won’t listen when administrators talk about her child, the parent they delegitimize because she got frustrated and yelled at them, the one who thinks she knows her child best. So what do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids — who cares what others think? This is what I call “embracing your inner bitch.” Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching…
Lisa Brandolo Johnson www.grembe.com I recently read about researchers who suspect that children with autism have a different chemical fingerprint in their urine than neurotypical children. While the researchers’ claims are questionable, a urine test for autism would save me so much emotional anguish. It isn’t that I really think my son was misdiagnosed and that he is on the spectrum — but it would just be a final answer. A yes or no test would be objective, it would remove the human element of error. It would be concrete. I am a parent of a child who, according to the Autism Diagnosis Observation Scale (ADOS), is classified as non-PDD. This is good news, right? This means all of his delays can go away, right? His clinical diagnoses of developmental delays, behavioral disturbance, and anxiety related to sensory issues? Without a test for autism, I am left wondering what it means for my…
Jess at Diary of a Mom adiaryofamom.wordpress.com I wonder ~ Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second? When you do wake up and I’m not here, do you wonder where I am? Do you understand why Mama has to go to work, baby? Do you know that it kills me to leave? Do you know that my heart breaks every single time I get into the car and drive away? Do you know that I think of you every moment of every day? Do you know how desperately I want to restructure your world — to make it less hostile, less foreign? Do you know how hard I try to make things easier for you? Do you know that I would give my right arm to take away your fears? Do you know…